The Disability Living Allowance in the UK is being replaced by PIP – the Personal Independence Payment; double-speak if ever I heard it! Everyone who currently claims DLA will have to be re-assessed for PIP, and Arthritis Care estimates that 42% of people who can currently get a car through the Motability scheme and higher-rate DLA will lose their cars through PIP.

At the same time I have just heard that the district nurses in a region near to us are no longer going to be doing what district nurses do, visiting people in their homes! So people are going to lose cars and then find themselves unable even to see a nurse. Apparently if people absolutely cannot, by any other means, get into the surgery, they will be provided with a courtesy car. I’ll be interested to see how that works out, and how much it costs, considering the district nurses only ever visited the people who couldn’t get into the surgery anyway!

The other thing that PIP is going to do to ‘save money’ is to change the current DLA walking test from inability to walk 50 metres ‘reliably, repeatedly, safely and in a timely fashion’, to someone who can’t walk 20 metres ‘reliably’. Reference to repeatability has notably been removed, so that anyone who can walk 20 metres on the day of their test will presumably not get PIP, even though with things like RA or MS, one might be able to walk a mile one day and no where the next.

2o metres is patently absurd; it seems to suggest that so long as someone can walk as far as the corner of their road or a neighbour’s house then they are fit enough to fend for themselves. According to the MP briefing prepared by a campaign group that Arthritis care are involved in, the 20m has not been based on any medical or scientific evidence; so it’s clearly a cynical decision to save money.

But in reality, much like the district nurses, how much money will it save? People who have their independence taken away from them will obviously be calling more on public services for help. The money will be being spent; just not from the same budget pot.

Who is this going to help?

Agree? Please write to your MP and tell them what you think and why. You can use the Arthritis Care Hardest Hit Campaign tool to help. All you have to do is put in your name and address; the tool will find your MP, produce a letter, which you can edit if you wish, and then you just press send to get it emailed over. It takes seconds – and it could make a real difference.

A protein called IRHOM2 has been identified as a possible new target for drugs aimed at treating RA, and could be useful for those who do not respond to anti-TNFs or even eventually replace anti-TNFs altogether. The full article on IRHOM2 can be found here, but here’s a short summary.

TNF or tumour necrosis factor has a useful purpose in the body; it is a signalling protein and it signals the body to produce a protective inflammatory response. Thus if a part of you is infected, TNF starts the process of inflammation, which takes immune response cells to the appropriate area in the blood, and they start to attack the disease-causers. In this case inflammation is a good thing.

However, when too much TNF is produced, immune cells start to act on things they shouldn’t, like our joints – leading to RA.

Anti-TNFs attack TNFs directly, and do a mighty fine job for many people, but they are toxic and can have nasty side effects.

IRHOM2 is a protein that helps to release TNF from where it sits harmlessly and inactively on the surface of cells, so attacking IRHOM2 should have the same effect as attacking TNF – reducing in TNF release and therefore reduction in inappropriately active immune cells, and so reduction in RA symptoms.

It is hoped that drugs targeting IRHOM2 would be less toxic, because they will only block TNF release from the specific cells that contribute to joint damage, and they could be an alternative for those who don’t respond well to anti-TNFs.

There is, of course, a long way to go. This is just the identification of a possible target. The next step is to find something that will actually block IRHOM2 and be safe to use in patients. Then there will be the long, slow plod (quite necessary for safety reasons!) through clinical trials, with no doubt a few failures along the way – but some years down the line this could be a real breakthrough. Let’s hope so!

p.s. I do hope this makes sense! I’m really, really tired and I haven’t had hubby proofread it yet!

Well, all those of us who suffer from RA and/or are women will already know that it’s not because we’re a bunch of winging Minnies, but until recently, although a genetic link was suspected, it had not been found.

Professor Alan Silman, medical director of Arthritis Research UK, said: ‘This is the first time that a genetic association has been established between rheumatoid arthritis and the X chromosome. This could provide a useful clue in helping us to understand why rheumatoid arthritis is three times more likely to occur in women.’

It was reported late last year that among the 46(!) genes that seem to be linked to people getting RA, some have recently been discovered that are on the X chromosome. Now both men and women have X chromosomes, but while women have two X chromosomes, men have one X and one Y chromosome instead, and the genes don’t occur on the Y.

Professor Jane Worthington, study lead based at the NIHR Manchester Musculoskeletal Biomedical Research Unit, said: ‘This groundbreaking study brought together scientists from around the world and involved the use of DNA samples from more than 27,000 patients with rheumatoid arthritis and healthy controls’ She added, ‘We observed remarkable similarities with genetic markers associated with other autoimmune diseases,’ which is an interesting, but perhaps unsurprising finding.

The intention behind all this work is that it will lead to new ‘genetic therapies’ – drugs that can target certain genes and switch them on/off as appropriate. Let’s hope they won’t be too long in coming!

Today was my first day back at work – knee flare seemed to be pretty much over: the swelling had gone right down, it didn’t feel terribly hot, but it was achy now and then. Hurrah.

However, now the other knee had started to ache – RA, or just a reaction to me walking ‘funny’ because of the left knee flaring? I don’t know – but to add to the mix, today being my first day back at work meant it was also the first day since the holidays where I haven’t spent a significant amount of time with my feet up – and I’m really feeling that this evening, as I sit here typing with an ice pack clamped between my knees, and the heat pack waiting for me in bed!

Here’s the thing though – we’re moving offices tomorrow!

Fortunately hubby has the day off and has been volunteered, slightly unwillingly but with good grace, to be my feet, and the facilities manager in the building is also going to help us lug stuff, and then my two colleagues are both fairly fit … so hopefully I can pull out a conductor’s baton from somewhere and just direct operations!

Well, whadayaknow? A knee flare turns out to be some kind of strange ‘dance’ move: you can see it here. Unfortunately it’s also what I’m having one of right now …. I’m dancing too: from the freezer to the microwave and the microwave to the freezer … mostly on one leg.

It started on Boxing Day evening – that’s Wednesday for those outside the UK! Just mild stiffness going upstairs – didn’t really think too much about it. Progressed to serious stiffness Wednesday morning which I assumed would pass of during the day. It didn’t. It got worser and worserer. By Wednesday evening it had started to be painful as well as stiff. I took paracetamol and grumbled.

Thursday my mum was doing a lunch for us and some friends. Splendid meal, good company but my sociability somewhat dampened by knee pain. That evening Mum asked if I did ice-packs or heat packs? DUHHH! Why oh why do I always forget those things?!

Pretty much since then I’ve either had an ice pack or a heat pack on it, or I’ve been moving around on it. It makes a huge difference. I can’t believe how stoooopid I am sometimes! But on the bright side, at least it’s starting to mend – or if it isn’t, then at least I’m starting to feel better.

When I had that shoulder injection I was finding it very hard to pinpoint exactly where the pain was, but I know it was kind of ’round the back’. Well … the pain round the back has gone, the mobility is improved but not great, but now I can exactly pinpoint the pain that remains and it’s to the side/front! I still can’t lift the shoulder much above the horizontal.

I went to see my GP about it last week and she’s put me forward for a scan. I was rather hoping for another injection but she says it’s too soon as, since there has been some improvement from the one I had, it should still be working away and might start to improve the other bit too. I rather doubt that, but she’s the doc, so we shall see!

The other thing she said was that if they do the scan and can see the exact spot that is inflamed, they can do the injection there and then and be sure that it’s in just the right place. And being the NHS, by the time the scan comes through I will certainly have left enough time between injections!

So for the moment it’s a waiting game … again!

In the meantime I have my second cold of the winter, and it’s not even supposed to be winter yet. <sigh, achoooooooooooo=””> I’ve also had an unpleasant flare through most of September and the beginning of October, but that seems to be over now – phew. As usual, nothing whatsoever showed in the bloods. In fact, when I have my six-monthly rheumy appointment in December I’m expecting him to say ‘Oh, did you have a bit of a flare in July – your bloods are slightly up.’ I was 100% fine in July!

I’ve been cruising along very nicely thank you for the last few months. I made the mistake of getting used to it I think … Great, I feel fine … let’s get on with stuff then. Well, you only live once, people to see, things to do, natural history surveys to complete, courses to go on, friends to see … Spanish to learn, embroidery competitions to enter.

Next time I see my rheumatologist, I thought, perhaps we can talk about reducing the MTX.

When will I learn?!

It started a couple of weeks ago with sudden, severe pain in my right thumb. Then it went away. I didn’t see it as a warning sign – I’d got too used to being footloose and flare free. Then it came back … and then other bits started to hurt too … ooooooooh-k, maybe this is a flare, I thought.

And it was.

Fortunately not a terrible one – one of my flare-ettes/aka fizzles, but bad enough to act as a little reminder. It’s over now … I think … but I’m back to being careful …

According to this article in the New Scientist (6 September 2012) the “the immune system has an on-off switch controlled by the mind”. On reading the article, one feels that this isn’t actually as daft as it sounds at first. The point is that, “the immune system is costly to run – so costly that a strong and sustained response could dangerously drain an animal’s energy reserves.”

Hmm, does that start to explain the fatigue felt by so many RA patients and dismissed by so many doctors? Given that RA is apparently caused by an over-active immune system, then surely a strong and sustained over the top response must be pretty fatiguing?

Anyway, back to the article … given that the immune response is energy sapping, the theory is that the immune system will only bother kicking in to fight a mild infection if it feels the reserves it will drain can be re-stocked. Apparently Siberian hamsters will fight a mild infection in the summer, when food supplies are plentiful, but won’t do much to fight it in winter conditions.

This leads to the idea that the mind has an ability to play up/down the immune response depending on whether it feels there is help available … and that leads to an explanation of why the placebo effect works. If you think you’re taking a drug to help fight an infection, say, that makes it worthwhile to put up a fight and bring in the immune system, the theory goes.

The theory has now been supported by some computer modelling, which is all explained in the article but which I won’t go into here.

It leads to some interesting questions, to my mind, about autoimmune diseases.

Being a little flippant here, does this mean that all sufferers of autoimmune diseases are optimists who are so confident that help will always be at hand, that we bring our immune systems in on the flimsiest pretexts?

Is the reason autoimmune diseases seem to have become so much more prevalent in the last few decades (so I’m told) because we’re all generally pretty healthy (until we’re not) and so the body/mind doesn’t have to question whether there are resources available?

And finally, if there’s an on/off switch in my mind, then why can’t I just turn the damn thing off and get on with life?

Penguin: Some exercises and some frictioning [a kind of massage on the tendon]

Physio: Oh yes, and how was that going?

Penguin: Well the frictioning last week really seemed to help.

Physio: Great. Let’s do some more of that then. Now, the exercises, it was this one, with your arm bent, raising up and out, yes?

Penguin: No …

And so went most of the session. Having said all that, she did do the frictioning and it did help, and once we’d established what exercises I was doing, all went relatively smoothly.

THEN she turned on her computer (with my notes on it of course).

What had happened was that I had the first appointment of the day and she’d obviously been running late and thought, ‘Never mind, I’ll wing it.’ So, a word of advice to health practitioners everywhere – don’t! I’m sure it took her longer to find out what she was supposed to be doing than it would have taken to turn on the computer before we started!

Well, I went for my x-rays – appointment booked half an hour before the dermatology appointment, and it all fitted in fine – I had about fifteen minutes to find the dermatology department once the x-rays were over, and I found it without any problem. All going rather well so far.

Then I waited … and waited … and waited … and waited – but that’s just the way it is. Fortunately I’d remembered to take a good book!

Dermatology lady said she’s fairly sure I haven’t got lupus (hurrah) but I have got rosacea (boo). Unfortunately I’ve been applying gunk to my face for nearly five months now and it’s not going away at all, so the obvious solution seems to be ‘try it a bit longer, and in the meantime we’ll discharge you’. Hmm … thanks a bunch!

Having said that, she was very pleasant, really took her time, asked sensible questions and listened to the answers. For that, I don’t mind waiting a bit!

One of the things she asked was, ‘Do you get night sweats?’ to which the only possible response was, ‘Do I get night sweats! You bet!’ So we talked about the whole ‘early menopause’ thing and the fact that although it started 5 years ago I didn’t seem to actually have gone through menopause and the hormones had never actually been fully investigated.

And that led to the delights involved in the title to this post. ‘I think we should test your hormone levels,’ she said, ‘ but I’m afraid the test is a bit long-winded. It involves a 24-hour urine sample.’ I couldn’t resist the obvious response. ‘I can’t pee for that long!’ Poor lady must have heard that one a few times before but she was very patient with me!

I have to keep all urine I produce over a 24-hour period and put it in a LARGE sample bottle, which I had to collect from the labs in a beautiful LARGE bag with things like, ‘Biohazard’ and ‘warning – dangerous substance’ stamped all over it, as it contains hydrochloric acid to preserve the sample, once the sample is in there. Luckily I had brought a bag for my book and other bits so I just put it inside that – otherwise slightly embarrassing to walk around with.

I haven’t done this test yet as she wisely suggested waiting for a day where I could stay in the house for 24 hours, and there aren’t many of those, but I’m planning to do it soon. Once done, and I’ll finish my 24 hours at 8 0’clock one morning, I have to jump in the car, dash over to the hospital, deliver the sample ‘for immediate testing’ and then dash up to the top of the hospital for a blood test – which should take place straight after the sample is finished – a bit tricky since I live 30 mins or so from the hospital! Never mind – hopefully it’s not THAT critical.

If anything comes out positive/negative/worrying about this test, that’ll mean further referrals etc. as it’s hardly a dermatology issue. It’ll be interesting to find out either way though, as the hot flushes and night sweats are horrendous at the moment and if there is something hormonal going on as shouldn’t be, it would be nice to know!

In the meantime I shall continue to be a ‘ruddy cheeked penguin’ – a rare breed indeed.

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A bit about me

My name is not Pollyanna and I'm not a penguin. If you'd not worked out the last bit you should probably stop reading this and seek out a psychologist.

This is a blog about me and rheumatoid arthritis - sounds like fun, huh? Well I'm hoping it'll be a bit more fun than it sounds - hence the Pollyanna part. I'm going to try to stay positive about it and play 'Pollyanna's glad game' - finding reasons to be cheerful basically.

If you really want to know more see the 'About me' page.

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